How does Acute Myeloid Leukaemia affect you? On World AML Awareness Day this is how it feels

Not only is the 21st of April World AML Awareness Day but it’s also the day that I was given my life changing diagnosis. Four years have now passed since that day, the day the life I’d been living ended and another began. I’ve lived three lives, the first before diagnosis, the second during my 6 months of treatment and the third post treatment because I’ve been three different people during each one.

Emotionally and psychologically AML has had a significant effect on me;

There’s been several different stages of adjustment and even now I’m not sure I will fully be at peace with it. The best way to describe is that I am constantly evolving, it is like someone pressed reset on my whole being that day and I’m continually rebooting.

Now I live with major uncertainty because relapse is a reality for those of us in remission, indeed AML only has a 15% long term survival rate so I’ve had to come to terms with this hanging over me.

Health is something you take for granted, the comfort blanket we all carry around with us… not feeling the coldness it leaves until we don’t have it around us anymore

What I want from my life has completely changed as it’s dawned on me how I want to be remembered and most importantly what legacy I want leave for my precious daughter; when I am gone how she will remember me is very important now. I’ve realised that memories, stories and achievements are what our loved ones have to hold onto once we are gone and I want my daughter to have many of me. Before my diagnosis I thought I had the rest of my life to do these things so I was drifting, believing I had endless time ahead of me but all that changed within 24 hours. AML needs to be treated immediately so I was rushed into hospital on the evening of 21st April 2015 and started chemotherapy the next day.

Because of this I’ve experienced a seismic shift in my mind-set so in some ways I just don’t fit into the life I was living in before. I can’t plan the future like most, can’t relate to the issues others find important, can’t function in the same way as many of my peers.

Some like to say that they understand as they imagine themselves in your position but unless you’ve actually had that gun pointing at your head, heard the click of its trigger, been to the point of giving in to death, tasted it when the pain and mental destruction became too much and you knew peace would finally come if you let go. This is how far to the edge AML takes you.

I now seek positive minds, like minds & those who only want to thrive alongside me; my life is too short to waste any more precious hours or minutes. One of the things my diagnosis has given me is enlightenment and the confidence to live a purposeful life. From supporting a newly diagnosed patient or a friend going through tough a time to being involved in blood cancer policy so that future AML patient’s will benefit.

Physically AML has had a massive impact on my body;

Every single day I have pain in my joints and muscles and the chronic fatigue makes me feel like I am thigh deep in treacle. Then every time I feel like I am making progress I get knocked back by illness or become so exhausted I can’t function.

I suppose I shouldn’t be surprised that my body feels battered, but this is something no one tells you and naively I didn’t think would last. Treatment for AML is one of the harshest of all cancer treatments with chemotherapy being intense and at a very high dose as well as being given on consecutive days. The consent form I had to sign included mortality, organ damage and secondary cancers. The after effects are overwhelming, long lasting and not something that can be rectified with a bit of rest and recuperation because there are several issues involved;

The bone marrow has been damaged by the disease and treatment so doesn’t work as efficiently as a normal persons does, it never recovers either.

Months spent in hospital, with treatment so harsh that patients inevitably spend time in intensive care and isolation leads to excessive muscle wastage (I was unable to even feed myself)

In my case the nausea and vomiting was so extreme that my weight loss, lack of fluid and calorie intake meant more medical intervention, a tube through my nose and into my stomach and IV fluids. Consequently the lack of nutritional intake for such a long time had a long term effect on my body.

Unfortunately chemotherapy not only attacks the cancer cells but also healthy cells and has a cumulative effect in the body therefore taking at least 3 years to be broken down after treatment.

Chemotherapy has a detrimental effect on the brain inhibiting the way it processes information, this has improved for me but is still and issue and in the beginning it was very extreme. I couldn’t speak sometimes, couldn’t understand questions and my memory was terrible. This is something many cancer patients talk about, often referred to as ‘chemo brain’.

My Life now

I now spend much of my time helping others because paying it forward has become extremely important to me and becoming involved with charity, Know AML and Macmillan has given me the right place to channel it. For all those who unlike me, did not get this second chance, who I know would have given anything just to be able to see another day, week, month or year I will make sure I earn my place as a survivor.

I am happy to say that now I am in a much better place despite living in remission, my mindset is such that I practice self care, believe in myself, my judgement and self worth. My life is calmer, happier and I am certainly fulfilled.

I never used to be so confident in my own mind, I used to let myself be influenced by others, usually the negative types. I know my worth, that I have integrity and am a good person and I have a lot to contribute. This mindset is incredibly liberating and has given me an inner strength that I never knew I had.

I’ve had the privilege of meeting and become friends with some truly inspiring and people who remind me constantly of the true meaning of life, kindness and selflessness. I’ve been the recipient of wonderful acts of generosity and thoughtfulness which has renewed my faith in humanity. In many ways my heart is full…

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Published by ButterflyinRemission

Welcome and thank you for taking the time to take a look at my page. So where to start...I'm in remission from acute myeloid Leukaemia, a charity Ambassador and fundraiser for Bloodwise, blogger, hopeful writer & pharmacy technician who has many obsessions inc craft, history, reading, box sets, digital art..... oh and there is not enough hours in the day or life to to fit all of this in!
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